Monthly Archives: January 2010

Our living room...complete with a ROCKING CHAIR!

Well, the apartment is now complete… we have a ROCKING CHAIR!!!  Thanks to my brother Matt and his kind sacrifice, we picked up a rocking chair from his house on Sunday and brought it back.  We also had a great time of worship at his church.  Last week and this week are filled with all sorts of pre-transplant testing, and then Friday is our Data Review.  This is where we meet with my medical team and review all the results from the tests and decide if the proposed schedule is still the best treatment plan. 

The interesting thing about a stem cell transplant that I have learned over my time here, is that the actual transplant is not what will cure me, but rather it allows them to give me higher doses of chemo and radiation.  If you think about a garden or a lawn that has weeds (cancer) in it, at first you try to kill the weeds while still trying to save most of the lawn or garden, this is similar to the first rounds of chemo that I went through.  The goal was to eliminate the cancer with the least amount of damage to the rest of my body.  But, somehow there were still seed cancer cells that survived.  So now we are going to spray roundup and kill everything and start fresh.  So first we harvested new seeds (stem cell harvest), and then we’ll go in with the roundup (high dose radiation and chemo) which will knock out the whole lawn (good cells and bad cells), and then I’ll have the transplant where they plant new cells to begin growing again. 

As with starting a new lawn, it takes a while for the seeds to begin growing, and during that time they are real vulnerable and fragile.  A doctor explained that it takes about 10 days for the stem cells to begin growing, and during that time it will be the “10 most hellish days I can imagine”, he explained that I will be flat on my back and I may not have enough energy to talk, BUT then the “miracle of stem cell re-growth will begin which will SAVE me!”.  The old technique of a transplant was a bone marrow transplant where they would take bone marrow out of the bone and then transplant back into the bone, but now they use stem cells.  The amazing thing about stem cells is that there are not necessarily “bone marrow stem cells”, or “white blood cell stem cells” etc, but rather just stem cells. Once the stem cells are in the body, they figure out what they need to become (”…for we are fearfully and wonderfully made!”).

Today my mom is about to head to a nutrition class and then we’re heading to the UW hospital for a TBI (Total Body Irradiation) simulation.  Not quite sure what that is, but I’m sure I’ll find out once I’m there!

The paparazzi were waiting to see me in the van with my parents... but I pulled a fast one and flew instead!

Well, I’m back at it again.  Contrary to public opinion, and to confuse the paparazzi, I pulled a double agenda change   I was originally going to come up this weekend, but my appointments got changed, so I was going to drive up with my parents on Wednesday.  At the last minute, I was posed with the option to drive 10 hours with my parents, or take a 1 hour flight. As someone stated, at least my mind is still somewhat in tact as I ingeniously chose the 1 hour flight.  I arrived yesterday at 11:30am, got a quick bite to eat, and then headed to the clinic for my first appointment which was at 1:00pm.  After several appointments of being poked, prodded, and tested for numerous things, I finally walked out of the clinic around 6:00pm with a card stating that I was radioactive for the next 2 days.  In one of the tests, they took out some of my blood and mixed it with radioactive material, and then injected it back in me while they videotaped my heart for about 30 minutes.  No wonder I have cancer!!! hahaha

We had a chance to move into our new apartment yesterday too.  We are staying at the Pete Gross House instead of the SCCA House.  Pete Gross was the voice of the Seahawks and helped build this 70 unit apartment building specifically designed for transplant patients.  There are strict guidelines designed to keep the building as germ-free as possible.  At times there can be a long waiting list to get into the house, but we were able to get right in.  This time, since my parents drove up, we had a chance to pack more of our belongings to hopefully make it feel a little bit more “homey”.  We are on the fourth floor and have a view of Lake Union, and only about 1/2 mile from the clinic. 

Our new address is

525 Minor Avenue North

Apt. #414

Seattle, WA 98109

view of lake union from my bedroom window... this is also where there is a water airport, so we've already seen many planes taking off and landing on the lake

The view of Lake Union from the transplant waiting room

Well thank you for everyone who has prayed for me and my family!  My parents and I arrived safely home last night and were excited to sleep in our own beds again.  Unfortunately, we are only home for a short period of time as my treatment plan has changed over the course of the past few days. 

My parents and I met with Dr. Bensinger, who is regarded as one of the top researchers specialized in Hodgkins Lymphoma and Stem Cell transplants.  Dr. Bensinger explained to us that since the cancer came back so soon, it’s possible that it is much more aggressive than we had originally thought, and therefore our original treatment plan may not be enough.  The original plan was that I would go through 2 cycles of chemo, store my stem cells, and then go through radiation, and only use the stem cells if the cancer returned at a later date.  It’s his opinion that we should stay on the offensive, and go forward with a stem cell transplant now, and not sit back and wait for the cancer to come back, but do everything we can right now while it is down.  We deliberated with my original doctor, Dr Cunningham, about this thought, and he explained that he has the utmost respect for Dr. Bensinger, and that he concurs with his opinion.  So the decision has been made to go forward with the transplant. 

At first the idea of a transplant took all of us by surprise.  The thought that “I’m not even that sick, certainly I don’t need a transplant?” keeps going through my head, but over the course of a couple days, everything fell into place and became more and more evident that this is the right course of treatment.  Right after we left Dr. Cunningham’s office to head back to see Dr. Bensinger, the two must have just gotten off the phone and Dr. Cunningham relayed our decision to Dr. Bensinger.  As soon as we walked in the clinic our nurse came out to greet us and said that Dr. Bensinger had just announced throughout the hallways “Transplant On” about a minute before we arrived.

So, now we have decided to go through with a transplant, what’s next?

My next appointment up in Seattle is January 25.  During the first week I will be going through multiple tests to determine baselines for my heart, lungs, etc. etc. The following week I will go through a conditioning phase of radiation and extremely high doses of chemo.  And then on February 11, I am scheduled for the stem cell transplant.  This is an autologaus transplant, which means that I will be using my own stem cells that I stored this past weekend, and I won’t be using a donor’s cells.  There is a lot more information to explain and cover, but I will explain more over the course of time.

my niece Annie is happy for my success!!! (Benjy and Susie's 19 month daughter)

That’s right folks, that’s how many stem cells they collected from me today!  They kept telling me that my goal was 5 million, and that it could take several days before they collect enough, but in day one I came through with a clutch performance and garnered out nearly 14 million!  Everyone was pretty impressed.  In fact, I’m willing to put my record on the line… anyone who can beat my one day record I’ll buy a steak dinner!!!

I’ve got blood tests every morning for 3 days, and then Tuesday morning I will meet with my medical team.  It looks like I might be able to come home possibly Tuesday night or Wednesday!

with my grandparents on Christmas Eve 2009

First and foremost I want to wish my grandparents (Tom and Ellen Codr) a happy happy anniversary! January 8 is their 70^th anniversary!!! Some have wondered how I can find joy in difficult circumstances, and I have to tell you that part of it stems from the example my grandparents have set before me.  Their love for each other and faith and trust in God through good times and bad times has set a tremendous model for those around to follow.  I can also tell you that they are my #1 prayer warriors.  Everytime I’ve ever gone to their house, even as a little kid I can vouch, that every morning begins with devotions and prayer for each and every child and grandchild.  I love and miss you guys!!!

It’s possible that tomorrow could be a pretty busy day.  The reason I say it “could” be busy is because depending upon how my blood counts are in the morning will determine if I have a procedure to put a port in my neck.  Though my veins are good enough for a vein to vein (see Merry Christmas post for explanation) harvest, they have strongly recommended to put in the neck port (mahurkar catheter).  Right now my blood counts are on their way down, and then they will bottom out, and then spike.  Once they begin to spike is when they will do the stem cell harvest. Because the Mahurkar is uncomfortable, they don’t want to have it in longer than necessary, so if my blood counts are up tomorrow, then I will have surgery at 2pm for the port, if not, then I won’t. 

In preparation for surgery I have to cleanse the area tonight and in the morning with a special solution, I also can’t eat 8 hrs. prior (which is a LONG time for me since I’m typically eating about every 2-3 hours), so I’m planning on getting up at 5am for breakfast, 7:30am blood draw, 9:20am appointment with Dr. Cunningham (at a different clinic), 10am daily neupogen shot, 10:45am nutritionist appointment, and then depending on my blood counts surgery at 2pm. 

So tonight I was planning on going to bed early in preparation for my 5am wake up call, but unfortunately I did a dumb thing!  I can tell you that everything is alright now, but it was a dumb dumb thing.  As I was washing my neck with the special solution I completely forgot about my PICC line in my arm and got it wet!  There about a million reasons why this was a dumb thing 1) Currently I’m neutropenic (basically without an immune system) so it doesn’t take much for me to get an uncontrollable infection 2) I’m scheduled for surgery tomorrow and if I have an infection then the surgery is delayed which means the harvest is delayed (which really can’t get delayed because there is a specific time when this is supposed to happen, not earlier, not later).  Anyway, so I called the clinic and thankfully there was a nurse still there that was willing to change my dressing.  We typically ride the shuttle from our house to the clinic, but the shuttle does run at night, so we had to walk.  It’s not far, probably a mile, but that’s quite a ways for me   Good base training for my triathlon!  But all is good, we walked to the clinic, got it changed, and walked back…AND now I’m going to bed!

LivingSTRONG!!!

Tim

Thanksgiving 2009

Congratulations to coach Pete and Boise State!  That was an amazing game.  My blood pressure got pretty high during the game, but I’m alright now   Dr. Cunningham, my main doctor, called me immediately following the game to check in on me, and send his congratulations.  I got to thinking before the game that I only packed a couple shirts that weren’t blue and orange, and that it could be a long time up here if  BSU hadn’t won.  But I can continue to wear them proudly!

Today was my first visit to the national renowned Fred Hutch Cancer Research Center and the SCCA clinic.  It’s definitely a whole new world.  Today I think I had 4 appointments, and tomorrow I have another 4 or 5 (they all run together after a while).  The complex is huge, and you file through the system like passengers through an airport.  I was given an id card at registration and I hand it to every person I meet everywhere I go.  The Nurse Practioner and Nurse were nice and personable, but everywhere else in the clinic I feel like I’m just a number.  I’m used to my bald head and my charm getting me extra treatment, but at this clinic, I had to wait in the lines with all the other bald heads (I can say that since I’m one of them).  It doesn’t take very long hanging out in “this world” to find out that there are a lot more people a lot worse off than I am.  It seems that the opening introductions seem to all be similar: “Where are you from?” “How long have you been here?”  “How much longer do you have?” “What’s your diagnosis?”, I’m sure it’s probably similar to the introductions in prison…hahaha  I really am super blessed.  Today my blood counts were good, and the nurse went through about a dozen common side effects that I could be having, but I am not experiencing any of them.  I’m still very weak and tired, but the side effects have been minimal compared to what they could be.

Another change that I noticed today is the way that I fill out medical history forms.  I used to be able to cruise through and check “no” on everything, but this time I had to really think on every question.  One in particular stuck out to me: “Do you get winded after two flights of stairs?”.  I had to answer “yes” to this question, but I felt that I needed to give a little explanation.  I wrote in the margin that if you give me a couple weeks, I could probably beat you up several flights of stairs…and not be winded!

At this point we’ve got appointments every day this week and we’re just waiting for my blood counts to get high enough to begin the Stem Cell Harvest. 

We had a great time tonight as Matt and Marie and the kids came over and brought dinner! 

eating a manly meal!!! Mott's applesauce, and Gatorade

Many have asked what the address is to where we are staying, so here it is:

207 Pontius Avenue N #412

Seattle, WA 98109

Also if anyone is interested, here is a link that gives a little more info…. http://www.seattlecca.org/SCCAHouse.cfm

Our view from the SCCA house of the New Years Eve Fireworks!

Hello!

As a new year begins, it’s hard not to look back and think of the many things to be thankful for.  I won’t bore you with the details of my list, but I can assure you that there are many things to be thankful for! 

Over the past couple days we have begun to meet other people living at the SCCA house with us.  Everybody is really nice.  Some are just beginning their journey and are in the midst of finding out if they have cancer, while others are undergoing advanced treatments.  I think just about everyone here can relate with the thought that none of us thought we would be here at this point in our lives.  We all have our “normal” lives back home, and it’s still weird to think…”hey, I’ve got cancer”. 

I am feeling much better than I was when I posted about feeling like Nemo.  I expect that each day from here on out I will continue to feel stronger.  I am really looking forward to watching Boise State play in the Fiesta Bowl tomorrow night!  I think I might go outside and stake out my tailgating spot tonight :)  Though I can’t really handle tailgating food at this point… it may have to be a Campbell’s Chicken Noodle Soup tailgating party. 

My aunt and uncle (Judy and Mike), were here this week and were a huge help!  They left today, and will be missed!!!

Go BRONCOS!!!

Dinner with Mike and Judy